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Ralph
Member in Phase 3
| Joined: | Wed Dec 8th, 2004 |
| Location: | Sydney, Australia |
| Posts: | 301 |
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Posted: Sat Nov 11th, 2006 03:55 |
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Hi All,
The AAIF (Australian Autoimmunity Foundation) was officially formed this morning in Sydney. I can't thank enough Robert Townsend , Robyn, Chris for organizing a wonderful conference. Many thanks to Dr Marshall and Liz for making the trip and being inspirational. To Trevor thank you for outlining how the MP is being recieved around the world and where we go from here.As you said there's going to be big developments in the next decade as the science becomes clearer on a number of fronts.
To all the MP members,I finally got to meet in person it was a pleasure to talk to you all. I suppose there's never enough time as 3 hours just flew past. To those that didn't make it I'm sure we will do this again in the future.
Thanks to all for your participation. It was great to be part of a new beginning in Auto-Immunity recognition.
Trevor and Liz we all wish you every success as you trek around Australia to spread the word that there is a cure.
To our Aussie Barb we missed you and you were in our thoughts always.
regards,
Ralph
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Lungsarc1/3/05fatigue,bod/ache,irr/heartbt/ no meds|getting/sun,Bolle's only, BeniCom 2/4/06 q6h Start Ph 3 12-2-07. Jan 07 25D 10.8,Oct-25D 8 1,25-23Dec07 25D-16.8 1,25-81 22 Dec08 D-14 1,25-28 Jan 09 25D-24 1,25-45
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Grace
Member in Phase 3
| Joined: | Tue Sep 14th, 2004 |
| Location: | Australia |
| Posts: | 396 |
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Posted: Sun Nov 12th, 2006 05:52 |
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Hi everyone
I took a few days off abx for the big oz mp event.Got up at 4.30 am{normally get up around 8 or 9},drove 15min to meet for the first time RobynO and JohnO.My daughter D1 came along as well.D1 commented on how nice it was when she said benicar,that others knew what she was on about.There was a real buzz and excitement to meet other mper's,Trevor and Liz,and I also got to see my son who lives in Sydney.So there was too many people to talk to.Soon as I got back in the car,I was kicking myself because of who I didn't get to speak with,what I didn't ask and that I didn't take any photos .The work that Robert, Robyn and Barb has done in in getting AAF off the ground in such a short time is incredible.I heard that a Sydney Doctor has 30 mper's-and sent other people along to consider mp.One of those considering mp happen to be on the same bus going home with son,and he like his mother couldn't help telling him about MP.About 8 of us had lunch with Trevor, where we were able to find out more about the history of MP.Robyn and John are very smooth drivers and good map readers.THANK-YOU. When I got home my daughter D2 asked if I got teary-Only when Robyn gave gifts from the AAF to Trevor and Liz, and she mention what mp has done for Matt.
I was dropped off and then drove back home.Even then I was able to splash some water on the garden,stack the dishwasher,made a phone call,showered and read before going to sleep around 10pm.All this activity I would not have been able to do before MP.Bit tired today but not crashing,and expect tomorrow back to my normal level.
Grace
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CFS, oct04 Ds=26/48, 4/07=7/24 MP PHI 2/05, PhII 6/05, PhIII 6/06, beni Q6H, Noirs rarely inside no nature light low watt, outside 40%10%, Hat, all covered, no gloves, paracetamol
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ShrnHml
Member in Phase 2/3
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Posted: Sun Nov 12th, 2006 07:10 |
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| Please, Aussies, keep posting and letting the rest of us share your excitement and progress with AAIF. Good luck and rapid wellness to all of you. .........Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19546 |
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Posted: Sun Nov 12th, 2006 08:46 |
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Thank you to All Aussies from the Sydney meeting:
Dr Marshall and Liz have delivered to me your Hugs and well wishes, and the card signed by many of you.... and the Gift of pretty soap, face cloth and hand towel, embroidered with a blue wren and the Australian wattle flowers.. see pic below.
We have spent a lovely day together.
Thank you All,
All best wishes to all of you, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Grace
Member in Phase 3
| Joined: | Tue Sep 14th, 2004 |
| Location: | Australia |
| Posts: | 396 |
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Posted: Mon Nov 13th, 2006 02:56 |
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I watch the sampler DVD that Trevor was handing out .It's brilliant.The 2006 LA recovery panel is great,as well as the healthcare panel .Our DVD burner is working overtime!!!!
Grace
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CFS, oct04 Ds=26/48, 4/07=7/24 MP PHI 2/05, PhII 6/05, PhIII 6/06, beni Q6H, Noirs rarely inside no nature light low watt, outside 40%10%, Hat, all covered, no gloves, paracetamol
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Fri Nov 17th, 2006 02:13 |
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 paperjunk - Caleb
Brisbane, Australia
at the Brisbane meeting with Dr Marshall..
pic courtesy Claudia and JRFoutin.. and Caleb. with thanks.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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paperjunk
Member in Phase 3
| Joined: | Sat Aug 21st, 2004 |
| Location: | Gothenburg, Sweden |
| Posts: | 49 |
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Posted: Fri Nov 17th, 2006 03:34 |
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| The moderately attended but dedicated Brisbane patient session was very useful and enlightening for me. It was good to meet Moxie, Claudia and Catherine among others, as well as Trevor and Liz.
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CFS 8 years| Zo-lpidem/piclone :Clonazepam: Melatonin, Avanza, Zyprexa| Mar 05: 1,25D=40 25D=6: Nov 07 1,25D=41 25D=8| Comm Ben: Oct 04| Mar 07: 40mgQ8H Mod Ph2| http://www.papercuts.me.uk
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robyno
Member in Phase 3
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Posted: Fri Nov 17th, 2006 10:20 |
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Dear All
I thought it was about time I sat down to tell everyone about our day with Trevor and Liz in Canberra (ie Wed this week). Grace - pease fill in the bits I miss.
Trevor and Liz arrived from Sydney at 6.50 am, poor things. Canberra turned on a brief return to winter for them, but I think all the other SE capital cities did the same thing so it wasn't just us. John picked them up (what can I say? I'm not a great early morning person....) and brought them home to have a cuppa and a bit of Grandma's Christmas cake while the rest of us had breakfast. It was great to be able to chat to Trevor and shoot him many of our accumulated questions and catch up with the events of the previous couple of days. Matt eventually got up and was able to say hi to Trevor before I took he and Liz to their hotel for a rest. I think Trevor won't be booking 6.00 am flights again in a hurry.
I then picked Trevor and Liz up around 1.45 pm to take them to the John Curtin School of Medical Research for Trevor's talk. Trevor has this collection of really neat electronic equipment (my boys went ape when they saw all that stuff) so we were there early for him to set up the video camera and his computer. The JCSMR now has this beautiful new building that Trevor took a video tape of before we went inside. The lecture theatre was very plush as well - I took a couple of photos of Trevor and Liz at the entrance to the building that maybe Barb can post here somewhere when I send them to her (Barb?).
I'd say there were about 45-50 people at the talk, which was a good roll-up (it was the second seminar at the JCSMR that day - they have lots of speakers passing through so not everyone can get to all the talks or they would never get any work done). Canberra's two main MP doctors were there, which was very important. The rest were mainly members of Canberra's medical and biotech research communities, and of course, Grace, Canberra's longest running MPer (sitting as far away from this great big window than she could possibly get!). Trevor obviously enjoyed the talk, as did his audience. He got some very interesting questions and question time was eventually continued outside the lecture theatre over drinks and nibblies. The fire drill kicked in at 4.00 pm as promised, and we were all kicked outside..............
On the way back home we called in on ElizaH and her son, Alex. She was thrilled to meet Trevor and have the opportunity to discuss her meds and herxes with Trevor himself. She would have loved to have been at Trevor's talk but is more or less bed-ridden and on oxygen 24/7. Many thanks to Trevor and Liz for taking the time to visit Elizabeth - she doesn't have many highlights just now but that was definitely one of them!
So it was more tea and drinks and nibblies at our place after that. Matt, John, David and I had a lovely time discussing Matt's progress and meds with Trevor - I'll post that news on Matt's thread on the weekend. John fired up the BBQ (it was freezing out there!) and our two MP doctors arrived for discussions with Trevor over dinner. All in all it was a very enjoyable and successful evening. John took Trevor and Liz back to their hotel around 10.00 so that they could be ready for their flight to Melbourne in the morning.
It was a great day and had many highlights. The first was spending time with Trevor and Liz and actually being able to talk. I am sure most of the Aussies who are able to spend time with Trevor will feel the same. John and I both felt that we had learned lots. Secondly I got a big kick out of hearing Trevor's talk - he really did a great job. I was thrilled that one of our good friends and colleagues was excited about the talk and "got it" - he is a lateral thinker himself and realised the implications of what Trevor was saying. He is now another ally to chalk up! And I have distributed three copies of Trevor's samplers to prospective MPers today and have more to burn on the weekend! The message is getting out there................it may be slow, but it's getting there.........
Can't wait to hear how things went / are going in the other capital cities - but from the little bit I have witnessed I would say Trevor's trip down under is a huge success!!
Regards, Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19546 |
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Posted: Sat Nov 18th, 2006 02:23 |
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Liz and Dr Trevor Marshall at The John Curtin School of Medical Research (JCMSR) Canberra Australia
The John Curtin School of Medical Research (JCMSR) is the premier medical research centre in Australia, based at the Australian National University, Canberra.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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ShrnHml
Member in Phase 2/3
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Posted: Sat Nov 18th, 2006 03:55 |
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Robyn and other Aussies.............thank you for your detailed descriptions of Trevor's time in Oz. Please keem them coming. Since he is such an important person in our lives, it's a privilege to follow him around through your eyes and ears.
I seem to be enjoying his trip downunder as much as you, ..............SharonLast edited on Sat Nov 18th, 2006 08:19 by Dr Trevor Marshall
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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RobertTownsend
Health Professional
| Joined: | Wed Oct 19th, 2005 |
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Posted: Mon Nov 20th, 2006 01:18 |
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TREVOR'S MELBOURNE VISIT
Trevor started with a presentation to Bio21 which is one of Melbourne University's multidisciplinary bio sciences research institutes. Two CFS clinicians attended. Light senstivitiy prevented me from attending this - perhaps someone else can post on how it went.
The patient meeting was attended by eight people - about half on the MP and half investigating it. Another 5 people sent apologies as they were unable, mainly on health grounds, to attend. The meeting covered lots of issues.
In the evening Trevor had a long one on one discussion with the Melbourne GP who was first to adopt the MP. The GP finished the meeting by saying he had learnt so much he was now much more confident in having patients on MP.
All in all a good start - given that this time last year there were no MP patients being seen here by Melbourne doctors.
( the last statement is just correct by one day - tomorrow is my first anniversary of starting Benicar !!! - and next week it will be seven months since I sold my wheelchair )
RobertTownsend
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CFS 4yrs,crippled knees;Oct05 Phase 1;Feb 06 Phase 2 ; Mar06 1,25D-61pMol/L 25D-23nMol/K;Jul06 Ph3 start ;July 08 dose tapering some abx,daytime fatigue much lower, skin still very light sensitive ;knee mobility very constrained with limited walking
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Moxie
Member in Phase 2/3
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Posted: Mon Nov 20th, 2006 01:22 |
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Our Brisbane meetings were very worthwhile. For me, it was great to meet 2 other MPers and 1 considering the MP person. I also took along a friend who has a friend who has a son (24) just diagnosed with sarcoidosis. Lovely to meet Liz and Trevor and hear the latest news.
We had 4 doctors attend the professional presentation in the evening. Trevor's presentation was very enlightening and this encouraged lots of spirited discussion and many questions - always a good sign of interest.
This meeting has lead to 2 more people adopting the MP - very serendipitous......
For me, I enjoyed seeing Trevor not having to wear dark glasses and learn more tips and strategies to assist me in my quest for much better health. I enjoy the science of this protocol and have greatly appreciated the content from the latest conference.
Thanks to all of you who participated in the conference by giving your time and sharing your stories, it really does help to see others recover and notice things like they are not wearing glasses as they did last year - all important things.
Moxie
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CFS 25 years - FMS. Benicar 3 daily - Ph 2 16/5/05 - Ph 3 10/5/06 Metformin 500mg 1/2 bd. Vit D 45nmol/L (18ng/ml) 1,25 D 92pmol/L (38.3pg/ml)
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19546 |
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Posted: Mon Nov 20th, 2006 01:29 |
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Report from Dr Marshall re Perth Meeting
All successful.. largest meeting apart from the Sydney group. Drs present.. 20 to 30 people. DVDs very popular. Thank you very much to the Perth people for their hospitality.
Perth ABC tomorrow 10am. see AUSTRALIAN MEMBERS notice
Perth Members from the meeting may give a more detailed report
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Foundation Staff.
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| Joined: | Sun Jul 11th, 2004 |
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Posted: Mon Nov 20th, 2006 02:00 |
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JUST A REMINDER...
At about this time -- 24 hours from now, anyone who wants to hear Perth ABC radio interview Trevor Marshall can get it on their computer using live streaming audio.
You may want to check it out now, so you will have everything ready for tomorrow. You will only hear audio when the program in on the air. The broadcast begins on the hour and runs for two hours. Trevor's interview will be at the beginning of the program tomorrow, about half an hour long.
Belinda
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Mon Nov 20th, 2006 05:22 |
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RobertTownsends daughter Catherine with Dr Trevor Marshall at the Brisbane meeting.
pic courtesy Claudia and JRFoutin.. and Catherine. with thanks.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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jillian
Member in Phase 2
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Posted: Mon Nov 20th, 2006 13:35 |
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Re: Trevor's interview on ABC radio live streaming.
For those of us not in Austrailia, the program begins at 10am in Perth.
If you'd like to know what time that is in your time zone, check out http://www.timeanddate.com . You can even make your own personalized world clock link there and save it.
'til later,
Jillian
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PrimryDX-PulmoSarc79,FMS,CFIDS,etc,disabled93. AvoidD/Noirs Aug02. Oct02: 1,25D=42 NTfrzen; Apr05:25D=10. P1 Oct05-Feb06; ModP2C Feb-Nov06; P2 Nov14-Dec06; ModP2BSS Jan-Mar07; ModP2CBSS Mar07-. Noirs & total light control in house.
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Dr Trevor Marshall
Research Team
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Posted: Mon Nov 20th, 2006 23:35 |
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The ABC Radio Interview has been cancelled, as there is too much news active over here this morning.
That is actually quite fortunate, as I need to squeeze in another presentation down at Murdoch Uni, in addition to the one I did yesterday at Royal Perth Hospital.
More details later...
..Trevor..
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Vicki SA
Member in Phase 3
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Posted: Tue Nov 21st, 2006 05:19 |
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In Adelaide last Friday, we had a good group to meet Trevor and Liz at the patient's meeting, about 7 who are on the MP and about 3 who are seriously considering the MP, plus carers/family members.
Trevor and Liz were very generous with their time. Trevor talked and explained the science and showed us some of his slides from the presentation for the Drs in Australia. Trevor was very good natured toward all participants and people were able to ask questions. We were in the meeting room for 2 hours (which went very fast!) and then we wandered down to the foyer (with Trevor being waylaid on the way surrounded by people asking questions). A small group stayed for a bit longer and talked until nearly 7.
It was lovely to meet Trevor and Liz and also really nice to meet other people on the MP. I think we may have to organise some more gatherings for the MPers in Adelaide! I think we could share our experiences and all benefit.
This is a link to Trevor’s presentation for Australian Drs
http://www.autoimmunityresearch.org/tm_aust_2006.pdf
Cheerio Vicki
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ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 30mg, 2008 - cover with light r/t Work 3/7, NoIRs, hat, cover well, invis. zinc for outside, low lux home, Sept08 25D - 8
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Lantern
Member in Phase 2/3
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Posted: Tue Nov 21st, 2006 14:21 |
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Trevor's Patient Meeting in Adelaide
It was fantastic to get along to the patient meeting here in Adelaide. A few of us found each other in the foyer prior to the meeting, and were able to have a short chat before it started. It's funny, I guess I had forgotten how isolating illness is until I felt the relief at being able to talk to others who were going through the same thing. It would be great to be able to gather and share some more, hello to everyone I met on the day, let's meet again!
The meeting itself was great. Our little meeting room was the perfect size as we had just enough space for everyone around the table. It came with jars of lollies that I didn't want to touch as I was sitting right next to Trevor!  After answering a couple of questions, Trevor went through a whole lot of slides as it was the best way to pack a lot of stuff into the time we had. There's just so much information, I don't think I'll stop learning about all the science behind the MP the whole time I'm on it. It was so interesting that the next day I decided to order the LAX DVDs so I can hear more from the comfort of home!
I was also glad to have had the opportunity to have an informal chat with Trevor afterwards, though by this time I'm sure the tiredness was kicking in as I seem to get more chatty and less brainy as the tiredness hits!  I must admit that before the day of the meet I was worried about getting rebuked for asking ridiculous questions. I did ask lots of questions, including some ridiculous ones, but Trevor graciously answered them all. Thank you Trevor, I really appreciate you being so kind and obliging!
I realised afterwards that I forgot to introduce myself to Trevor or Liz (who is also really lovely). I guess they will be meeting lots of people on this trip and it would be hard to remember everyone, but I still felt a little rude. (Blame it on brain fog and a few nerves!) Apart from that, everything went well, and as Vicki said, the time went very quickly! My family were surprised that I had lasted so long out as it is defnitely the most I have been able to do for a long time. It's only having been on the MP for the last 6 1/2 months that enabled me to go in the first place, so many thanks to Trevor, not only for his work but also for his continual effort in sharing his knowledge!
Vicki SA, Dr Trevor Marshall, at the Adelaide, Australia meeting November 2006.
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CFS IBS Malabsorption Hypothyroid Rickettsia. Ph1 Apr06, Mod.Ph2 Oct06, Ph2 Feb07, Ph3 Aug07. Endep T3/T4 Panadol. NoIRs, homebound in low lux. Apr07 1,25D=15.4, 25D=13.6
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Tue Nov 21st, 2006 20:13 |
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Dr Trevor Marshall and wife Liz at Adelaide meeting
pic courtesy Vicki SA and JRFoutin.. with thanks.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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DianeW
Member in Phase 3
| Joined: | Mon Oct 17th, 2005 |
| Location: | Perth, Australia |
| Posts: | 121 |
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Posted: Wed Nov 22nd, 2006 06:58 |
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Hi to everyone, from Perth W.A.
It was a pleasure to meet Dr Marshall on Sunday evening. Peter and his partner were kind enough to open their home and the event was very well attended. Patients and would be patients, their partners and three or four doctors, about 20 in all. It was nice to put faces to the names as we had not previously had any personal contact. I hope we can keep in touch.
It was unfortunate that the ABC radio interview was cancelled, it would have been a good opportunity to reach those people who are not aware of the Protocol. I remember the original interview a year ago. Perhaps we shall have better luck next time.
Thankyou to Dr Marshall for his patience and good humour at the end of a very busy week
Diane
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Sarcoidosis hypothryroid 125D52 Ph1 May06 Ph2 Aug06 Ph3 Apr07 25D 4.8 Dec07 / 6.8 Mar09 /
8.4 Sept 09 thyroxine paracetamol paradex Valium NoIRs cover up
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